Over the next couple of weeks we’ll be publishing three blog posts shining a spotlight on Scotland, Wales and Northern Ireland. We want to raise awareness and celebrate the great work being done and fantastic services available in these areas for families affected by a life-limiting condition who may require their support.
Children’s palliative care services play a vital role in supporting families caring for seriously ill children, providing specialist facilities and support throughout. Finding the right services that address each family’s needs can be difficult, with children’s requirements and interests varying widely, but there are plenty of support systems and resources available specifically for Scottish families.
Charities in Scotland such as CHAS, PAMIS and Charlie House among others work to provide families with the best possible support from day-to-day interactions and assistance, to planned trips and activities for families, creating lasting memories and giving families positive experiences during the most challenging of times.
Children’s Hospices Across Scotland (CHAS)
CHAS is a charity that provides hospice services for babies, children and young people with life-shortening conditions across Scotland. The national charity offers palliative care and respite for the whole family via its two hospices, Rachel House in Kinross and Robin House in Balloch, and via its CHAS at Home service, which supports families in their own homes and has teams working within hospitals across the whole of Scotland.
- Rachel House – A ‘home from home’ in Kinross with a hydrotherapy room, sensory room, teenage den and large accessible garden for supportive and inclusive play, relaxation and reflection.
- Robin House – On the edge of Loch Lomond in Balloch, families love its beautiful and fully accessible garden which has its very own pirate ship and castle. The hospice also has a large play room and arts and crafts area, teenage den and hydrotherapy pool for the whole family.
- CHAS at Home – the team care for babies, children and young people in their own homes across Scotland in between hospice visits or when they are too ill to travel. Generally, the support is short term, but it is regularly assessed to ensure it meets the needs of each individual family. For families who live in isolated areas, the service is a lifeline.
- In hospitals – CHAS’ Diana Children’s Nurses work alongside NHS staff and other care staff to provide clinical leadership and support in the planning and delivery of palliative care. By working together, families can have a greater choice of care about where and how their child can be cared for, whether it’s in hospital, at home or in a CHAS hospice.
- Counselling – This involves regular sessions with a trained counsellor working through a range of issues associated with palliative care.
- Bereavement support – CHAS offers bereavement support for the whole family through counselling, one-to-one support, group support, spiritual care and remembering days.
- End of Life Care – Advice and planned guidance for families, including Anticipatory Care Plans (ACP) and Child and Young Person’s Acute Deterioration Management Form (CYPADM).
- Spiritual Care – Spiritual, religious and pastoral care is offered by chaplains located at both Rachel and Robin House.
Promoting a more inclusive society (PAMIS)
PAMIS focuses on providing Scottish families affected by profound and multiple learning disabilities (PMLD) with professional and compassionate care. They offer a range of services covering all aspects of palliative care.
- Family support service – Specialists partner with families and professionals to ensure children and young people can access appropriate care.
- Assistance with self-directed support – Families who are taking control of their own care are supported and guided by PAMIS specialists.
- Postural care – Advising Scottish families on how to provide the best postural care for loved ones in need of assistance.
- Leisure activities – Providing accessible recreational activities for ‘family time’, such as wheelchair ice-skating or multi-sensory storytelling.
- Transitions project – PAMIS provides families with specialist support when transitioning to adult’s care services.
Charlie House is a local Scottish care charity, providing services and support for children living with life-limiting conditions, and their families in North East Scotland, ensuring they are #MakingMemories at every possible moment.
- Facebook family community – join the private Facebook group to connect with other families and organise trips.
- Activities club – Monthly activities for children and families ranging from play sessions to ice-skating or trampolining.
- Community team care – Supporting children and families from initial diagnosis, aiding with transitional needs as well as assisting at home.
We always love the activities, a chance to meet other friends and enjoy a new activity or something different. Charlie House really makes a difference to our lives and our daughter's.
Trips and Breaks
There are also specially organised outings and holidays for families and children, ensuring accessible and relaxing respite breaks. Although many feel they are not able to take a break or a holiday whilst caring for a child, these organisations ensure that all children and families are able to enjoy quality time together.
- PAMIS Breaks – Accessible and flexible respite breaks for families looking after a child with PMLD (profound and multiple learning disabilities). You can visit Callum’s Caravan at Haggerston Castle Holiday Park or relax in ‘The Coach House’ holiday cottage for a little family getaway.
- Charlie House Activity Breaks – Charlie House provides family short stays throughout the October holidays in Kielder Forest Park to help families make lasting memories.
- CHAS Breaks – CHAS arranges specialist outings for families including themed breaks, concerts and family days.
Trips like these where a disabled child can take part in so many activities, which would have previously seemed impossible, gives you the confidence to believe that with the right support, guidance and information - this small restricted world we are a part of can be so much bigger and the future brighter.Family member on Charlie House's Activity Short Breaks
Help for the wider family
Importantly, these services also support those involved in caring for a child, including siblings. This ranges from helpful resources online which look at approaching difficult conversations with children or specific breaks designed for siblings.
CHAS has a page outlining available support for brothers and sisters, offering hospice space for quality time, as well as organising special events encouraging them to forge support networks with other siblings. Find out more about caring for siblings here.
Charlie House also offers a Sibling club, helping to connect brothers and sisters in similar situations as well as providing siblings with the support they require.
Both CHAS and Charlie House provide the opportunity for parents of children living with a life-limiting condition to connect and talk to others in similar situation. Parents are often so focused on finding the best care for their child that they may not take the time they need for themselves. These services allow family members who are dealing with similar issues to connect and take some time out, something especially important for those who are new to the palliative care journey.
Charlie House offers a Parent Support Group giving parents a chance to share their own experiences with others in similar positions, and CHAS offers families the chance to truly relax with private bedroom suites for parents and the opportunity to have a massage or beauty treatment by its team of fully trained volunteer therapists.
The Siblings Club is invaluable. The able-bodied siblings are often not taken into consideration and they are so important!Family member on Charlie House's Sibling Club
Have a look through these lovely pictures provided by CHAS and Charlie House, showing the great work they do for families in Scotland.
NHS Inform Scotland,for info on all aspects of palliative care, including practical help with holidays, travel and driving assistance.
Family Zone, Children with Exceptional Healthcare Needs,for info on services available for carers in Scotland including Take a Break and Family Fund.
Parenting Across Scotland, for disability information and resources for children aged 5-12.
NHS Scotland Useful Links,for children with exceptional needs, including both UK wide and Scotland-specific organisations.
ENABLE, services for Scottish families affected by learning difficulties.
Please let us know if we have missed anything! Do you live in Scotland, could you recommend a service or facility? Pop us an email by clicking here.